Nolan – Frontosphenoidal

When Nolan was first born I noticed nothing he was a beautiful little baby boy, looks a lot like his big brother. At about 2 weeks old I noticed his temple on the right side of his head was more indented then the left. At his circ. follow up appointment I pointed out to the pediatrician who thought it was still just something that happened at birth and that it would correct itself. Then at his 1 month appointment I brought it up again because nothing had changed and I now noticed a difference in his right eyebrow as well. She looked at it and brought up the word Craniosynostosis and referred us to a neurosurgeon. Daddy and I were worried at this point, but thought surely its nothing, having to go to a Neurosurgeon was extremely scary. We met with the Neurosurgeon on January 6th when Nolan was 6 weeks old and they confirmed it was right Coronal Craniosynostosis. We were devastated to find out that our little boy was going to have to have surgery. About a week later Grandma and Grandpa Rohr called us with a new procedure they do for this that is suppose to be less invasive so of course we looked into it right away! On January 17th we went to get CT scans taken of Nolan’s head to send to the Neurosurgeon in San Antonio, TX who specialized in this new procedure called Endoscopic Craniectomy. The wait to find out was horrible. We heard back from them finally on January 25th and they told us that Nolan didn’t need surgery and that all his sutures were open. We were so excited. Just to reassure us that everything was fine I then sent the scans back to the first doctor we saw in Henderson, NV. She called me back and said to NOT rule out cranio and to make sure we have close follow ups. So at this point my husband, Ryan and I decided we needed to see another Neurosurgeon so we found one in LA. On February 16th we headed to LA. At that visit the doctor said yes Nolan had right coronal cranio. We took this as our final answer, but being that we were moving we needed to find a new doctor to do the surgery. The timing they would want to do surgery fell when we would be back in Kansas so we went ahead and found a doctor in Kansas City, MO. We met with him on March 7th. The doctor reviewed our CT scans and he then ordered that we get some new scans taken. From these scans he saw that the sutures were indeed still open and that our son for sure did not have right coronal craniosynostosis but that something was for sure going on, be it positional or a very rare condition called Frontosphenoidal Craniosynostosis. They took pictures for their records and asked me to sign a consent so they could share his pictures in classes to teach others of rare forms. The next day we found out that Nolan did have Frontosphenoidal Cranio. WOW! He is what they think is the 8th known child in the world to have this form. We were still waiting for a surgery date at this point and we couldn’t wait for this to be behind us. In the mean time I had joined a support group called Cranio Kids and another called Avery’s Angels and Alexa’s Appeal for Craniofacial Awareness and Cranio Care Bears. Through these groups I was blessed to find a mother in Denver, Summer, who’s son was number 6 with this condition and a mother in Washington D.C. who’s daughter was number 7. They were great in answering questions I had, I don’t know what I would do without the support of everyone. My family and I made our move to another state and the days passed with still no word about a surgery date. I finally gave the hospital in Kansas City a call. The Neurosurgeon a few days later returned my call. He told me that he had recently decided he didn’t want to perform the surgery and that he was referring us to The Seattle Children’s Hospital. So once again it was a waiting game to get a date, again I took things into my own hands. When I called the hospital in Seattle they had never received any information on Nolan, I was really upset to say the least. At this point we were all alone and back at square one with were we were going to go to have our son’s surgery. I then called Summer in Denver who’s little boy was the 6th case with this type of cranio. I got the information for the surgeons that performed his surgery and set up our appointment at The Children’s Hospital in Denver, CO. We met and were immediately given a surgery date! Nolan had his surgery on July 8th and it was wonderfully successful! Nolan is an awesome little guy and so adorable. He is always so happy and we couldn’t ask for a sweeter baby! He adores his big brother and is right on track with all his milestones, so although this has been hard and quite a journey we feel blessed that he could be fixed and he will grow to be a handsome happy boy!